Gluten Challenge

[anewlife]

I have been on a gluten free diet now for almost four months. I had a endoscopy which was negative for celiac disease but there was some question about its veracity since I had not been eating gluten prior to the test. The GI doc wants to do a "gluten challenge" and recommends that I eat 2 saltine crackers a day for three weeks. Then he will repeat the endoscopy. I am concerned because I have read that you need to eat about four pieces of bread a day for at least a month to get an accurate testing. Does anyone know how much gluten should be eaten and for how long? Thanks so much for the advice.

[mushroom]

You know, to answer really truthfully, I don't think anyone really, really knows how much gluten is needed and for how long. Everyone has their own ideas, opinions, criteria, suggestions and I really don't know of any evidence based research on this. Most doctor estimates are ridiculously low, like eat a cracker today, test for antibodies tomorrow and a scope the next day. Those who seem most knowledgeable about the subject recommend the equivalent of three to four slices of bread a day, some say for six weeks, some say for two months, some say for three months. Who do you believe? I certainly wouldn't put my faith in a result based on a couple of crackers a day for three weeks, but I can't honestly say how long, for you specifically, it would take. It takes a while for the antibodies to appear in the bloodstream in measurable quantities (and this is different from the immediate reaction you experience), and then you have to redamage your small intestine.

I am wondering why you are suddenly wanting verification... Did your symptoms not go away, are you concerned about other family members, is it something your doctor wants? For me, it would have to be a really important reason to eat sufficient gluten to make the challenge worthwhile, and there is no point in doing the kind of challenge your doctor is suggesting, in my book. You would be setting yourself up for another negative.

[anewlife]

You know, to answer really truthfully, I don't think anyone really, really knows how much gluten is needed and for how long. Everyone has their own ideas, opinions, criteria, suggestions and I really don't know of any evidence based research on this. Most doctor estimates are ridiculously low, like eat a cracker today, test for antibodies tomorrow and a scope the next day. Those who seem most knowledgeable about the subject recommend the equivalent of three to four slices of bread a day, some say for six weeks, some say for two months, some say for three months. Who do you believe? I certainly wouldn't put my faith in a result based on a couple of crackers a day for three weeks, but I can't honestly say how long, for you specifically, it would take. It takes a while for the antibodies to appear in the bloodstream in measurable quantities (and this is different from the immediate reaction you experience), and then you have to redamage your small intestine.

I am wondering why you are suddenly wanting verification... Did your symptoms not go away, are you concerned about other family members, is it something your doctor wants? For me, it would have to be a really important reason to eat sufficient gluten to make the challenge worthwhile, and there is no point in doing the kind of challenge your doctor is suggesting, in my book. You would be setting yourself up for another negative.

I originally went gluten free on the recommendation of a rheumotologist who thought that I had gluten sensitivity. I did not test positive in any of the blood tests done a couple years ago but had a positive finding in anticliadin antibody a long time ago. Based on my symptoms, abdominal pain, fatique, weight loss, osteoporosis, vit d deficiency, bloating, constipation, joint pain..... she recommended a gluten free dairy free soy diet. I began the diet but then was advised to have the endoscopy done so that I would know for certain if it was Celiac. So I ate gluten for a week or so and had the test done. It was negative in appearance and biopsy for Celiac.

However, I continued on the diet and did find some improvement in energy, my vit d improved, my periods started again (had not had one for 9 months) but I am still having alot of abdominal pain. So I went to a GI doc to see if I had something in addition to gluten sensitivity and he is questioning the diagnosis.

Long story, I am sorry. What do you think?

[mushroom]

Are you still dairy and soy free also? Do you eat a lot of corn? I would like to know what you eat a lot of because many of us have additional tolerances besides gluten and often tracking these down will solve the residual problems. It is encouraging that you have shown a lot of improvement by removing gluten - gluten is obviously a problem for you, whether it is celiac disease or not. And celiac disease is really just one manifestation of gluten intolerance - the kind that they have devised testing for. There is non-celiac gluten intolerance for which there is no test except a positive response to the diet. So it is possible that you could go through a full three months of eating gluten and still come up with a negative celiac test, and then what will you have learned?? I am playing the devil's advocate here

Personally, I think before I would consider eating gluten for two or three months I would keep a food and symptom diary and see if I could find any other food triggers. Often it is the gluten-free grains themselves that our systems are not used to digesting which cause us problems.